A Day of Tradition and Community

by Jennifer Ferraton

Moebius Syndrome Awareness Day has become a special tradition in our home. Each year, we celebrate by making an MSAD craft and decorating our dining area together. This year felt extra special because our daughter, Ivy, had a friend over to join her in creating the craft, turning it into a shared and joyful experience.

One moment that really stood out to me this year was when an organization commented on one of my MSAD posts. It may seem like a small thing, but it felt exciting and affirming — something that hadn’t happened before — and it reminded me how far awareness and connection have come.

MSAD always reinforces just how strong and supportive the Moebius community truly is. Seeing all the posts, shares, photos, and messages each year is incredibly heartwarming. It’s a reminder that we are not alone and that there are so many people standing alongside us.

My hope is that people come away from Moebius Syndrome Awareness Day with a better understanding that Moebius syndrome does not define who a person is on the inside. A lack of facial expression does not mean a lack of feeling. Emotions are there — they just may be expressed differently.

Having a day like MSAD matters deeply to our family because Ivy has Moebius syndrome. I want her to feel surrounded by love and support, and to know that she is not alone in her experiences or challenges.

For anyone experiencing Moebius Syndrome Awareness Day for the first time, my advice is simple: enjoy it, participate, and be loud. Your voice matters.